Tag Archives: travel with Alzheimer’s

BOP AT THE BEACH

 

beach

 

When my daughter in New Orleans, who loves sun and surf, brought up the possibility of a family week at the beach, I wasn’t surprised, but then my son in New York, who hasn’t let the sun shine on him directly since he was 18, jumped on board. I was thrilled. We were going on one of those three-generation beach vacations I’ve always heard about never thought I’d actually get Ralph to do. But he did.

Ralph agreed the plans seemed doable: not too long a drive; an area of north Florida he knows well; a house big enough for all of us to have privacy; most important, a covered porch with a beach view.

Of course, as the date approached, he grew less and enthusiastic.

 

Ralph: I can’t leave the dogs.

Alice:  They’ll be fine. Pedro will feed them and walk them every day.

Ralph: I hate the beach.

Alice:You don’t have to go to the beach. You can sit on the porch.

Ralph: I won’t have anything to do.

Alice: You can do exactly what you do here, and you will even have someone to drink beer with (unfortunately)

Ralph: How long are we going again?

Alice: Four or five days(actually seven but who’s counting)

 

After multiple (in the hundreds at least) variations of this conversation, I started getting nervous. For one thing, I remembered our last car trip months with its multiple stops for Ralph’s nervous stomach, with cigarette fumes blowing in through the open passenger window despite my requests that he not smoke, with his constant complaining how much longer. For another, I was secretly worried about the dogs, or rather about whether Ralph could survive a week away from them.

 

In fact, the drive was blissfully uneventful; I’d loaded the car the night before to give Ralph maximum pre-drive sleep time in the morning; he needed only three stops in five hours, and he was willing, most of the time, to vape instead of smoke. Since we were the first to arrive, Ralph helped haul the supplies inside before settling on the porch with a real cigarette while I unpacked and organized supplies. Then I had about twenty minutes to sit down myself before the others showed up and the week began in earnest. Those were the last peaceful twenty minutes I had for the week.

For the next seven days there were seven of us eating together, beaching together, laughing and/or arguing together, playing with BabyRalph together. There was also lots of me cleaning up and cooking and organizing the troops, and also biting my tongue and going along for the ride. Let’s face it; family vacations are like childbirth and marriage—universally the same while observed from outside, but intensely individual while going through the experience.

The group high of the week: a hilarious game night of charades and identity games, in which even Ralph got more or less involved

The group low: not the semi-frequent rain but an expensive, mediocre restaurant dinner that took forever and left everyone grouchy with everyone else.

My private low: The stress of maintaining a balance between involving Ralph in the life of the family and letting Ralph relax his way, ie by sitting alone smoking endlessly on the porch and drinking as many beers as possible. Not once did he venture to the beach, not even to see his grandson’s first experience of the seashore. And controlling his intake of beer was more difficult under vacation conditions although I found it bittersweet, the way the adult kids (including son-in-law) took turns sitting with him evenings on the porch, reminiscing and philosophizing beer after beer.

My private highof the week and going forward forever: BOP. For a while now BabyRalph has been calling his mother Mama, his father Papa, his 14-year-old sister Dada (no clue why but he refuses to call her anything else), and me Nan (sounds more youthful than Gramma or Nanna, don’t you think?). By the first day at the beach his uncle had become Jaak. And then Ralph became BOP.

Where BabyRalph came up with BOP is anyone’s guess, but it is genius. BabyRalph would run around the house calling BOP BOP BOP. And BOP would be dragged from the bed where he was napping or the porch where he was smoking to sit for a few minutes in the big blue armchair by the window so BabyRalph could climb into his lap and chatter away for a few minutes before one or the other drifted away.

On the last day I was the one ready, despite the allure of beach and waves and family, to leave behind the cleaning and cooking and organizing (and family), while Ralph/BOP was in no hurry to leave at all. As for the dogs, he asked about them exactly once.

So, whether he knows it or not, more trips are in the works.

 

 

 

 

 

(And also a bittersweet, if I’m honest, I always get a little envious of hungry attention from the kids how even now Ralph gets a kind while I’m kind of taken for granted.)

 

A New Test Drug for Alzheimer’s Apathy Creates A Different Kind of Test for Me

 

 

At our recent annual check up NP Stephanie suggested Ralph might qualify for a study on using Ritalin to treat apathy.

Apathy is clearly an issue for Ralph like so many others dealing with Alzheimer’s.  Or at least “apathy” is the quick way I, and evidently plenty of others, have described the increasing indifference and lethargy that occurs in those on the Alzheimer’s spectrum.

And barring a cure, finding a treatment for Alzheimer’s apathy is obviously a good idea. Sitting in Stephanie’s office I agreed immediately that Ralph should try see if he qualifies for the study. Stephanie called the clinical research nurse in charge of the study to see if we could meet right away but after an unsuccessful game of phone tag, she left the nurse a message with my contact info and we came home. A few days later I missed a call from the nurse. I called back but we too started a game of phone tag that lasted two weeks. Then two or maybe three days ago, the nurse and I finally talked and she described a 6-month blind study requiring one daily pill that may or may not be Ritalin and a monthly visit to Emory. Not exactly demanding.

While we were on the phone she went ahead and emailed me forms. I was to read them and get back to her with dates we could meet in the next two weeks.

Of course, I said.

Except as the hours and then days passed, I put off opening the email.

I started thinking, Do I really want to be bothered? Is the minor possibility of improvement worth the effort?

But those questions were only a cover as I toyed with darker thoughts. Will Ralph be more trouble if he is less passive? Is it easier to just let him float further out to sea?

Then this morning, I opened another email I’d been avoiding, this one from the aging study I’m in. It was two short surveys, one on resilience and the other on purpose. Resilience was a piece of cake; I could tell my coping answers were fine. But as for purpose, ugh, I hated those questions I couldn’t avoid answering honestly—like   “Disagree Highly” with having goals I look forward to accomplishing.

I am the one with the apathy problem. Or we both are. But I’m the one making decisions for Ralph.

So with admitted reluctance, I emailed back …actually the emails have been flying as I write this, multi-tasking semi-whiz that I am …and his appointment with the study nurse is scheduled for next Wednesday and in my calendar.

And now I feel much better actually, having passed, if barely, my test as caregiver.

And yes, if my overall mood does not lift, I will deal with it.